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Professor Focuses on Fibromyalgia
C. Jessie Jones
C. Jessie Jones, professor of health science, works out in the Lifespan Wellness Center. Regular exercise helps her deal with symptoms of fibromyalgia, a disease that can cause chronic pain and fatigue.

December 1, 2005
By Valerie Orleans

C. Jessie Jones, professor of health science, was the picture of health. She exercised regularly, played tennis and ran marathons. Her diet was healthy, and her area of expertise was helping the elderly stay mobile and active. But about 10 years ago, she began experiencing chronic pain and fatigue.

“Over the next three years, I went to numerous doctors to undergo many tests. I was tested for several types of medical problems, including lupus, rheumatoid arthritis, multiple sclerosis, depression, hormone imbalances, thyroid problems, Epstein Barr and cancer,” she recalls. “One physician told me that I had thyroid cancer. After the surgery he said, ‘Well, the good news is you don’t have cancer.

The bad news is that we removed your thyroid.’”

Finally C. Jessie Jones received the correct diagnosis: fibromyalgia. Since then, she has turned her attention to helping others suffering with this medical condition. Jones is currently heading up the development of a Fibromyalgia Pain Management Program to be housed in the Center for Successful Aging. Most recently, she has been conducting research with a team of medical researchers across the country, including one of the top experts in the field, Robert Bennett, professor of medicine at Oregon Health and Science University, to learn more about this disease and what triggers it.

Not long ago Jones took some time to answer questions about fibromyalgia and her efforts to learn more about and increase awareness of this chronic pain disorder.

Q: What is fibromyalgia?
A: Fibromyalgia is an illness that causes chronic pain — usually widespread musculoskeletal aches — as well as pain, stiffness and tissue tenderness. It can also cause pervasive fatigue and sleep disturbances. The most common sites of pain are the neck, back, shoulders, pelvis and hands, but pain can occur in other areas as well. Although the symptoms are always there — some days it’s not as bad as others.

Q: How widespread is it?
A: It’s hard to say because it’s frequently misdiagnosed as arthritis, lupus or other diseases. In fact, it often takes up to five years for a patient with fibromyalgia to get an accurate diagnosis. However, having said that, physicians are becoming more familiar with the disease. Current estimates indicate that anywhere from 3 to 6 percent of the U.S. population has fibromyalgia, with 80 percent of the sufferers being women.

Q: Tell me about your research.
A: We are conducting the first national, multi-site epidemiological study on fibromyalgia, a great opportunity for patients to paint an accurate picture of themselves and their experiences for the medical community and pharmaceutical companies, as well as the general public. We received grants from Cal State Fullerton and the National Fibromyalgia Association (NFA) to develop a survey questionnaire that is currently posted on the NFA Web site. Our goal is to have a response of 5,000 people with fibromyalgia. Within the first day of its release, 1,000 people had already responded to the survey.

Q: What are you trying to discover with your survey?
A:

There are several areas we are focusing on. First, we want to determine the prevalence of fibromyalgia among different age and ethnic groups, both genders, and in different regions of the country, as well as gather other demographic information. Secondly, we want to have a better grasp of the underlying factors associated with the onset of fibromyalgia. Third, we want to develop a medical profile of the disease.

We also want to determine the impact of fibromyalgia on functional abilities, psychosocial aspects of life, general well-being, medical costs, employment and productivity.

Finally, we want to learn more about the effectiveness of pharmaceuticals, over-the-counter remedies, and psycho/ physiological interventions.


Q: You are looking for those currently diagnosed with fibromyalgia?
A: Yes.

Q: Haven’t there been these kinds of studies before?
A: There haven’t been any large-scale studies for at least a decade. That makes this study especially important, because our knowledge of fibromyalgia has advanced so far in the last 10 years. Many more people are being accurately diagnosed with fibromyalgia now than they were 10 years ago. The participation of all these patients in the survey will give us a much more comprehensive picture of who fibromyalgia patients are, and what their experiences have been.

Q: What causes fibromyalgia?
A: Although the cause is unclear, the latest research indicates that several factors contribute to fibromyalgia, including genetics and neuro-endocrine imbalances that cause sensory processing problems in the central nervous system, resulting in pain amplification. It appears that for many people, some sort of trauma — whether it’s physical, emotional or psychological — may act as a trigger for fibromyalgia.

Q: Is there any evidence that explains what’s happening?
A: Well, it is believed that those with fibromyalgia experience low levels of nerve growth. The chemical imbalances in our neurotransmitters create imbalances that lead to some of these symptoms. But there is still much more we need to learn. We also don’t know what the optimal treatments are. We hope, from this survey, to get a better idea of what works and what doesn’t. Based on this research, we can develop clinical trials and other research methodologies to find ways to help sufferers cope with the symptoms.

Q: How bad is the pain?
A: Symptoms can vary from day to day, or even from hour to hour. There are days when getting out of bed requires an almost superhuman effort, when I’d like nothing better than to just curl up and try to hide from the pain. And then there are days when I can comfortably prepare myself for the day and meet all my responsibilities. But no matter what I do, the pain is always there. Sometimes it’s just a thin veil covering me, and sometimes it’s like being smothered in a heavy comforter. But it’s always there.

Q: Is there any advice you would give to somebody suffering from fibromyalgia or who suspects they may have it?
A: I recommend they visit the NFA Web site, www.fmaware.org. They will be able to find a great deal of information that may be of help to manage their symptoms and learn about clinical research that hopefully one day will find a way to reverse the symptoms, or find a way to prevent fibromyalgia. Until then, I believe the keys to easing the symptoms include having a strong support system; staying educated about fibromyalgia; taking care of the mind, body and spirit; living a balanced lifestyle; keeping faith and hope; and maintaining a positive attitude — the brain and mind can have amazing effects on the body.

Other Cal State Fullerton faculty and staff members who are working on this project include: Judy Lindemann, family nurse practitioner in the Student Health and Counseling Center; Shari G. McMahan, chair and professor of health science; Pamella H. Oliver, assistant professor of child and adolescent studies; Dana N. Rutledge, associate professor of nursing; and Jie W. Weiss, assistant professor of health science.


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